Feeling scared and lost.

Hello

Hi ladies. I'm new to the site. Reading through your experiences has made me feel confident that all will be fine with me, but I feel like I know nothing. My situation seems to just be never ending. I just want it to be over. But Here's my story so far.  Well I was 29 years old and stupidly had never had a smear done. My husband urged me to go get one done, so considering we'd only been married two years I thought I should. So in July 2012 I went for a smear. A month later or so I get a letter saying I had abnormalities found and required to go for a coloscopy.So on 4th Aug 2012 I went for coloscopy. Day after getting back of a family holiday with my family. I lay down and she got me all hooked up. She swabbed My cervix with the iodine and there they were my abnormalities. Then she asked "Is there any chance you could be pregnant" unfortunately the answer was yes! So she didn't do biopsy. Said I was to go back in 4 weeks once I had a period. But during this time waiting I was also suffering with some painful pelvic pains and got sent for a pelvic scan. To find out at the scan I was 5 weeks pregnant! So phoned coloscopy told them and I was just to go at 12, 20 and 32 weeks for check ups. And once baby was born then get LEEP. I ended up miss carrying baby in the October.  It had died 5-7 weeks. But I didn't miscarry til the October. Then November and December passed in a blur. My LEEP was then rescheduled for April 2013. But on FEB 16 2013 I found out I was pregnant again. A decision I made on the fact i heard u are more risk of miscarriage after LEEP. And I was to scared to go through that again. So pregnancy went well this  time with a few coloscopy's. LEEP was then set for Jan 2014. Went in for the treatment and she could get the speculum in as it hurt so much. So she booked me in to have it under GA. That was done Feb 16th, then results came on March 7th to say I had early cc. MRI done, was told all was ok. Then on March 22nd the decision was made that it was best I have a hystorectomy. They finally phoned me 2 weeks ago to say I had appoint for procedure on 5th June.  Then yesterday got phone call to say it's now cancelled cause they want me in a different hospital. So just waiting. No idea who to speak to. I've read a lot you said that your cancer was removed with leep and all is fine. Is that same for me? If so why a hystrectomy. I feel like I do t know anything. Some u know what your cancers are called and your margins, I feel so stupid. Like I know nothing. And freaking out with this waiting that it's still there growing. I'm silly in the first place leaving it so long.  I wouldn't be  this situation if I had just had my smears. On top of all of this I've been having severe pain in my groin, hip ovary area. I pee all the time and having hot flushes. The last 8 weeks I've had severe period pains but no period :( I feel a mess....sorry for the long rant. I'm just feeling rather alone atm. :, ( 

Hi

What a tough time you have had over the last couple of years.  Please know that you will never be alone on Jo's, all the ladies are wonderfully supportive here.

Yes, you should have gone for smears but I never missed one and I was still diagnosed with CC so stop beating yourself up over that one.

I was diagnosed after my colposcopy and then the MRI confirmed it.  You say you were told early CC after colposcopy but OK after MRI but still needed hysterectomy.  Have you seen anyone after your MRI or was you just told by letter?  You really need to speak to someone and I would suggest the team that did your colposcopy.  I was called back by the consultant that did the colposcopy and he told me I had CC with a Macmillan nurse present.  Have you seen a Macmillan nurse at all as in my experience these are the best ones to talk to to find out what is happening.  There should be a nursing team where your colposcopy was done and I would suggest you phone them and say you need to talk to someone and ask some questions.

You need to ask if you have actually got CC and did anything show on the MRI.  If you have then they should be able to give you a stage and grade.  My margins weren't given to me until after my hysterectomy.

If you can't contact your hospital team then please speak to your GP and tell him/her your worries and concerns and ask for their help.  Please don't sit there worrying and waiting.

Message me anytime if you need any support etc.  Good luck, really hope it goes well for you and that you get some answers very soon.

Hugs, Cheryl,xx

I know how you feel. I used to come on here and people knew their stage, the name etc eTV. I didn't find out any of these details until after my radical hysterectomy so don't fret too much about that. I agree with above. You need to go to the gp or call the team and ask done questions. Maybe write it all down before you call so you don't miss any questions. Good luck! 

 

Hi, thank you so much for your replies. Feeling more relaxed today. ;) 

I went for LEEP in Feb the histology from that showed early CC. I went for MRI on Monday 6th March and my oncologist got results straight away I had an appoint with him on the 7th. He just said that is came back good. And there was no spread.  I only know my grade which is 1a because when I was at my GP I was looking over her shoulder at the letter she received from the hospital as she read it. They recommended the hystorectomy since I've had my children. I guess I'm just stressing, since my doc didn't say to me that the LEEP probably took it away. And the hystrectomy is just a definite treatment. I'm just worried that a cell has been left behind and it's growing still. And it seems like I've been waiting for ever. I'm such a worrier. I guess it's the fact you never think it'll be you who hears you've got cancer. Such a scary word. 

Once again I appreciate your replies. 

Hugs x

Just thought I'd update. I finally got my appointment for hystorectomy on 23rd June.  Pre op on Monday. Feeling better now I have a date. Now the nerves set in :) 

I had to go to doc last week cause I found a lump in my breast. She told me I've to give it two weeks b4 she'll do anything about it. Since I had just found it that day. Do u think I should tell them at my pre op? Cause I'm thinking they'll just tell me to go back to GP. 

Thanks x

Hi

Pleased you have got your date now so at least you know things are moving.  It will soon be over and you can then concentrate on your recovery.  My op went far better than I thought it would - I was terrfied but in retrospect there was no need to be.  You will have to take it carefully afterwards, baby steps at first gradually building up but you'll be amazed at how well your body can heal.

That's not nice finding a lump in your breast at this time.  Thought it strange that your doctor told you to give it 2 weeks before she'll do anything about it as you had just found it that day - perhaps she is just wondering if it is due to something else.  I've never had personal experience of this but my next door neighbour found a lump in her breast about 6 weeks ago and her GP sent her for tests/scans straight away.  I think I would probably mention it at the pre op just in case it affects anything.

Hugs, Cheryl,xx

Hey Cheryl thanks for reply.  

Yes I thought with everything that's going on she'd refer me. She said she wasn't concerned at this time. I thought I was just being paranoid about the lump. But Doc said she could feel something.  But wanted to see what happened with it after 2 weeks. There the Docs I guess u gave to believe what there saying huh! Well anyways decided ill mention it on Monday anyways. Can't do no harm :) 

Hugs x